Using his voice

An aggressive and to this point incurable brain cancer has never been able to silence Adam Hayden. But now, the Greenwood resident has an even bigger stage for his voice.

Hayden, who was diagnosed with glioblastoma two years ago, is one of a handful of cancer patients featured on and the LivingWith app. The resource is provided by pharmaceutical company Pfizer and allows people with cancer to keep structured records and notes, track progress and connect with doctors and other patients.

“I think it’s cool to see what other people are up to,” Hayden said. “Seeing the stories highlighted of other people that are living with cancer and how they’re giving back to the world.”

Hayden has maintained a blog, Glioblastology, since he was diagnosed in May 2016. Originally he wrote primarily about his physical recovery as well as the emotional impact of wrestling with the idea of his own mortality. His blog drew a sizable following and led to numerous speaking engagements in the Indianapolis area.

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In recent months, he’s been writing a bit more about the role of a patient advocating for change and bringing awareness to his situation. One of his bigger points in those posts was that patients rarely receive any reimbursement for their involvement in work that ultimately furthers the medical profession.

Given the massive expenses that can come with battling a long-term condition, Hayden believes it’s important to give patients in that position a chance to offset some of those costs.

“If you were hired to come in and give a lecture to medical students or something, typically you’d be paid by a university,” Hayden said. “But patients are sometimes invited (to speak) and are not paid.”

Hayden penned an op-ed on the subject for STAT, a medical journal, and it caught the attention of a staffer at Patients & Purpose, a health care advertising agency that partnered with Pfizer on LivingWith. Through that initial contact, Hayden wound up becoming one of the featured patients on the project. Having his story highlighted on the app and the website has increased Hayden’s visibility.

He was recently in Chicago for a meeting with the American Association for Cancer Research. During that trip, patients were paired with scientists in small groups to share information with one another on a variety of topics. He also went to Washington, D.C., to deliver the opening and closing remarks at an event hosted by the Eliminate Cancer Initiative. He spoke to a group of researchers and pharmaceutical representatives about the importance of urgency in cancer research.

Such trips might not have been possible for Hayden a year ago, when his body had been ravaged not only by the surgery to remove a baseball-sized tumor from his brain but also the treatments that followed.

But after going through physical therapy, he can get around his house without a cane most of the time and has become self-sufficient enough that he felt comfortable returning to work on a part-time basis at Briljent, an organizational change management firm that does contract work with governments and corporations. Fittingly, almost all of Briljent’s work is related to health care.

“I’m probably in the best shape I’ve been in since diagnosis and surgery and all that,” Hayden said. “I think my body’s pretty much recovered.”

He still takes medication to prevent seizures, and he still deals with frequent fatigue and headaches, but overall he is pleased with his health. He was also glad to find out through study that glioblastoma can come in a number of different mutations, and the mutation he has tends to respond much better to treatment.

The average survival time post-diagnosis for glioblastoma patients overall is about 12 to 15 months. For Hayden’s particular type, the median is 31 months, and he’s become friends with patients elsewhere who have pushed well beyond that. Being more aware of those positive outcomes has helped brighten his outlook.

“The crisis mode of ‘You’ve got this diagnosis and it has limited life expectancy,’ I think we’ve pushed past that, where every day is not, ‘What’s going to happen today?’” Hayden said. “That uncertainty and anxiety has dissipated a lot, which is a really, really good thing.”

In addition to returning to work and accepting more patient advocate opportunities, his comfort level overall has improved to the point where he’s allowed himself to pursue a more ambitious undertaking — writing a book about his experiences.

“That’s a longer-term project that I wouldn’t have felt like I could undertake a while ago,” he said. “Now I feel confident, like, ‘Yeah, I can take on a big project like that.’”

All of the writing that he’s done throughout his journey has helped Hayden to retain a sense of himself, something that’s not always easy for someone battling cancer.

“What I’ve said is, as much as you can, get back to doing the things that feel like you. Like writing — well, that feels like me, so I keep doing that. And I think the app, it’s the same thing. It’s the whole idea of the big long title, “This Is Living With Cancer,” is to highlight people that have cancer but are still doing their thing,” he said.

“So for me, that was my reason to get involved. I want to highlight, ‘Here I am using my grad school background and using my interests to keep doing me.’”

[sc:pullout-title pullout-title=”Adam Hayden” ][sc:pullout-text-begin]

Age: 36

Home: Greenwood

Type of cancer: Glioblastoma (an advanced grade IV brain cancer)

Date diagnosed: June 10, 2016

Treatment: Surgery, chemotherapy and radiation therapy. After surgery, he was admitted to an inpatient acute rehabilitation therapy hospital to recover lost sensory and motor function. Receiving quarterly MRI scans to monitor the status of the cancer.

What has cancer taught you?

"Cancer has taught me to live with strange tension: Everything changes, yet nothing changes. By this I mean cancer, especially an incurable cancer that is life-limiting, like glioblastoma, upsets a person’s sense of identity, purpose, and spiritual and emotional grounding. It is a complete perspective shift to recognize that my illness limits future opportunities open to me, and relationships take on immediacy and urgency to strengthen bonds of connection and build memories. At the same time, nothing changes; rent and utilities are due, the kids need to make it to school on time and the house chores must be done. I learn a little more each day about navigating the middle ground between these extremes."

How has cancer changed you?

"A good friend of mine, a doctor, wisely told me that a devastating medical diagnosis is the heat that burns off the unimportant details on the periphery of life. It is easier to forgive others and to express kindness because you are reminded that we often do not know the challenges other people are facing."

What would you tell someone just diagnosed with cancer?

"It is important to return to activities that you enjoyed before your diagnosis. Cancer shakes a person to their core. It is important to recover that sense of who you are — what makes you you — so you aren’t swallowed up by anxiety and depression. Even if you do not have the energy, stamina or strength to return to your favorite activities, I recommend working with physical therapists, occupational therapists and your medical team to modify favorite activities to "feel like you" again.

While recovering from surgery in the hospital I asked my wife to bring my journal so I could return to writing — an activity I have always enjoyed. It is important to shift the narrative from thinking, ‘I’ll never do this again,’ to instead, ‘What can I still do, only differently?’"